Freshly diagnosed, need advice

willgetthrough

Any help will be appreciated, very new to the topic. About month ago, I had prebiopsy PSA around 45, and later got following biopsy results:

Agregate Gleason score 7 in about 70% of the volume. The primary Gleason image consists of small and medium-sized glands in groups within Gleason image 3 and are represented in about 90% of the volume, while fused microtubular glands with immature tubules and partly macroacinous cribriform are present in about 10% of the tumor volume. In these parts, there is moderate pronounced nuclear-cytoplasmic pleomorphism, with indicated nucleoli, but without mitotic figures. There is lymphatic involvement and two perineural spaces. The stroma is desmoplastic, with a moderate mononuclear inflammatory infiltrate.

My MRI showed n the peripheral zone on the right a lesion 28x13x33mm PI RADS 5. At the level of the base of the prostate on the left in the peripheral zone a lesion 15x8 mm PI RADS 5, In the peripheral zone of the middle part of the prostate a lesion 12x8 mm PI RADS 4

MRI showed also not enlarged, but "suspicious" lymph node.

Scintigraphy was ok, as well as MRI of the abdomen.

I have a meeting with oncologist in ten days. I have to prepare. Any suggestion would be highly appreciated. Thank you!!!

teammiller425

I feel for you- My husband was just diagnosed through biopsy, and has 4+4 Gleason 8- We have a meeting with an urologic oncologist at Duke on the 21st-

Not sure how much information you've been given and I know it's overwhelming, but....Do your research! Get a fantastic doctor with tons of experience even if you have to travel- You have to be your own best advocate- Find good support people to have around you..

Also, Google You Tube Prostate Cancer Research Institute. It's got a ton of info explained by a doctor that's easy to understand and digest- There are a ton of topics on prostate cancer. Our particular Urologist has not been forthcoming on info so I have basically been finding out everything I can to educate myself... There's hope. Head into your meeting armed with any info you can find - You got this!!!!

Old Salt

Sorry to read that you have so much cancer in your prostate along with a pretty alarming PSA result. To evaluate whether the cancer has 'escaped' a PSMA directed PET scan should be next. A 'classical' bone scan might be appropriate as well. While you wait for these tests, try to read up on prostate cancer.

willgetthrough

Thank you. I am reading a lot. Just wondering if I will need to make some decision at the appointment that I will not have enough information on. PSMA PET scan is for sure. Surgery or proton is probably what will be a decision down the road.

willgetthrough

https://csn.cancer.org/discussion/comment/1710960#Comment_1710960

It was the same with my urologist too. I do read a lot. Just wondering if I would need to make a decision that I have not much info about at the meeting.

teammiller425

https://csn.cancer.org/discussion/comment/1710965#Comment_1710965

I would not make any decisions until you have researched ALL options that pertain to your particular diagnosis- I'm glad you're getting the the PSMA pet scan done. They will have more info after that! And so will you. Please check out pcri.org. and the videos on that site-I think you will find it helpful!

willgetthrough

Thank you all,

For where it is now, I will ask for psma per scan and some form (not sure which) of genetic screening. And then see it from there how to proceed.

bdhilton

https://csn.cancer.org/discussion/327366/freshly-diagnosed-need-advice

I would seek out a recognized university medical teaching hospital for a second opinion ASAP...send your stats and a nice email requesting treatment to the dept. head...my experience with university teaching hospital has been excellent with medical professionals teaching what they are treating you for plus on the edge of treatment choices ...all the best

Clevelandguy

Hi,

Good advice from the survivors above. If its contained surgery or Proton are good choices, thats why its important to get the PET scan and bone scan to provide you with the proper decision making info. With the cribriform and suspicious lymph node it sounds like your cancer might be migrating outside your Prostate, need to know in my non medical opinion if that is true before you proceed.

Dave 3+4

willgetthrough

Thanks Dave,

If migrates outside, probably proton will be option nevertheless. From what I am reading, if proton therapy is administered without ADT they make a beam a bit stronger. Not sure how much really are long term chances lower without ADT, it seems there are conflicting opinions. Trying to search for reputable study on that matter. If they are much lower, would go with ADT. If not, probably diet, supplements and lifestyle makes more difference.

Best of luck!

willgetthrough

An update: After a few months, did not start treatment, but plan to do it soon. Did PSMA scan, and even if it is 3+4, one lymph node is glowing, obturator one, closest to the prostate - with 3x6 mm lesion. It automatically gives a very high risk status. PSA stays within 50 range.

There is a newer TRIP study from Japan showing that brachytherapy plus ebrt with 6 months of ADT or with 24 or more monts of ADT had the same cure rate with high risk patient. It was a pre PSMA time, so the high risk patients probably had node involvment.

Main dilemma is ADT duration and type of ADT:

One Hopkins radiologist told me that after 6 months the cure rate for cancer is the same as it was for longer ADT, but longer ADT has longer survivability rates. Also, it seems that that brachytherapy can give shorter ADT duration. The other radiologist from NCNN center said that difference with 6 months vs 2 years of ADT gives about 15% higher cure rates.

I also need to see will I get a Lupron, insurance denied Relugolix (Orgovyx). It seems Orgovyx gives lower cardiovascular issue rates and better recovery ther Lupron. Contacted some Orgovyx help page, from manufacturer, to see if they can lower the price for me since insurance denied it. Did anyone had an experience with Firmagon? Arbiraterone will be given together with whatever ADT.

Leaning towards brachytherapy plus 6 or 9, maybe year of ADT. Hopefully not more.

Any comment will be appreciated 👍.

This journey is complex and it takes much more time then anticipated.

Oldernow

Good morning will

I have some input for you concerning Lupron. https://csn.cancer.org/discussion/327535/lupron-living-with-the-side-effects?utm_source=community-search&utm_medium=organic-search&utm_term=lupron

Following radiation and (so far) 12 months of Lupron ADT my psa remains <.03 (undetectable) so something is working. The downside is the major side effect of Lupron - very low testosterone. I have one more 6 month Lupron shot scheduled for the beginning of April. I will be extremely happy when this med is out of my system...

oldspice

https://csn.cancer.org/discussion/comment/1713167#Comment_1713167

I am currently on Firmagon which I actually preferred because it is an antagonist vs Lupron which is an agonist. They work somewhat differently but end results are similar. Lupron may cause issues due to “testosterone flare” where as the Firmagon does not have that reaction. I have BPH issues so my Urologist suggested the Firmagon for me. The first few days were difficult on the first injection with minor side effects since and the second injection is 1/3 the dosage so even less side effects. I am quite satisfied although weight gain and fatigue is bothersome but you are likely to have that with any ADT prescribed drug. Exercise is highly suggested. Best of luck.

willgetthrough

Thank you, I will speak with my doctor about Firmagon. If it is similar to Orgovyx, which is not covered by insurance, it might be an equally good option.

Old Salt

A good exercise regimen will help to counter the effects of low testosterone due to 'hormone therapy'. It's easier written than done, I know...

willgetthrough

It is easier written then done, but will try... Everybody talks about exercise, there must be a value in it. Just doesn't feel like it even right now, can't imagine after the shot and radiation together.

oldspice

Firmagon is the same as Orgovyx in that they both are antagonists and act the same way although Firmagon is injections and Orgovyx is in pill form taken daily. Old Salt is correct about the exercize but possibly younger folks could have more energy to do more. I think it lessens the side effects some but trying to maintain weight is a major issue at least for me. I wish you the best.

centralPA

...brachytherapy plus ebrt with 6 months of ADT...

The old "triple play" as it is known. Sounds like an effective approach!

willgetthrough

https://csn.cancer.org/discussion/comment/1713216#Comment_1713216

Pursuing this in hope it might cut on ADT time, but not sure am I taking into account everything.

The TRIP study from Japan is convincing, although it did not take into account node positive, but was nevertheless done before PSMA scans and considering that PSA eligibility was more then > 20, some lymph nodes involvment was certain. Results were the same for both 6 and 30 months ADT duration.